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When you run out of memories

by: Deana Cavan

I suppose if you count the months in my belly, we got to know Rett for a year and a half. It’s a terribly short time to know someone–especially someone who you love more than life. And when I think back to that time when he was physically present with us, of course the only memories that truly have stuck with me are the traumatic ones.

I know this about myself–I am cursed with a terrible long term memory. My life as a child, teen, and young adult is basically lost. The only memories that stick are the ones I have photographic evidence of (a reason I take so many pictures wherever I go now). Of course, Jim is good at reminding me of the special moments we’ve experienced together. I’m thankful for that.

Rett should have turned ten this weekend. A full decade, double digits. I see so many parents celebrating this milestone (and wishing their kid would “stop growing”). It’s no one’s fault that they feel this way, but it does hurt when I would give the world to watch Rett grow up. I see boys his age and wonder what he’d look like, what his interests would be, whether he and his sister would be best friends like she claims they would be… but I have no idea because I only got to know him for 9 months. It feels like not enough to truly know someone, even if our souls have known each other for eternity.

And now that ten years are gone my memories have faded to almost nothing, all I remember is that he suffered, greatly, and even though I have photos of him smiling and videos of him playing, the memories scourged into my mind are of him crying and hurting and dying in my arms. I’m not going to shake this off with a silver lining, “at least” statement because frankly, I think I’ve acted too strong all these years. Always coming up with some sort of beautiful meaning for his death. Acting like running Rett’s Roost was an adequate substitute for raising my son.

This weekend we had some family visit on Rett’s birthday. I wanted the day to feel meaningful, and although the sun shone brightly, and I felt good enough, it really was just an ordinary day. The only thing I could think of to honor him was to make a human 10 on the top of Mt. Agamenticus. It was silly and not really meaningful at all, but at least I have a photo of “something” we did to celebrate Rett.

I asked Jim about a cake, but we both agreed, that would be weird to sing to him (I think we’ve done it once or twice but not this time). We didn’t actually even talk about Rett at all. Jim thought maybe we’d all go around and say a memory we have of Rett’s life. But when I tried to think of something I could stay, my mind just went to all the hard days, and I thought everyone else’s mind may do the same. Instead we hugged, and knew that we were all thinking of him, but no one offered any words, we never shed a tear.

As I write this, I’m able to cry, but for some reason around others I’ve always been uncomfortable doing so. Sometimes I wish I was more emotional, to show people the reality of my loss. Every day since 2/22/15 I’ve had to choose to keep going. And what has happened is that I’ve created this image of myself as someone who has all their shit together, who walked through fire and now brings buckets of water to others, who is at peace with how their life has turned out. Lately, however, it’s started to feel like a big huge façade.

As we enter into the tenth year of Rett’s Roost’s retreats, I wonder. Can I continue being strong for others? Did I actually ever take time for my own grief, or did I just pretend all these years? I have a quote taped up on the wall behind my computer, “We rise by lifting others.” I completely agree this is true–it’s been my way of rising out of the depths of grief. I do want to keep Rett’s Roost alive, but I also realize that I’ve done a lot to honor Rett, perhaps to my own personal detriment. Maybe my anxiety and insomnia and discontent would subside if I moved on to something new. Or maybe they’d only worsen.

Let me tell you, running nonprofits is hard. Asking friends and family to continue funding this work is hard. Finding people with the passion and skills to help sustain the organization is hard. I feel burned out, my creativity fizzled, and my ambition waning. Last year was the first year we made less revenue than the year before. That feeling of losing momentum brings up so much doubt in my mind.

Every once in a while I hear from someone that they are impressed by our mission and programs. That there is nothing else like it out there (there is, but still a sweet sentiment). I know that what we offer is valuable to families, I hear it again and again from parents. And I wish we could create our retreat program in several locations around the country as people have suggested. I just have no idea how to make that happen. I feel as though I can barely keep it going here in Maine. Each year feels like a scramble to find a suitable retreat location, enough funds, and families to participate. For ten years, I have spent my days honoring Rett through the organization in his name. Yet, I don’t feel satisfied. I’m not sure I ever will because there is no way to ease the ache I feel inside without Rett.

One thing you learn when you lose a child is that you cannot control your future. You can only control how you react to the twists and turns and changes and losses. I’ve never been afraid of change and I think that’s one of my greatest attributes. But right now it feels hard to find that new motivation or spark of inspiration. I’m ready and waiting for a change right now. Ears and eyes open for a message from Rett. Do I let Rett’s Roost shrink to just offering two retreats a year, so as not to let it dissolve completely? Or do I attempt to find that person or organization that can help us bring our meaningful and healing retreat program to more and more families from coast to coast? Part of me wishes for the latter, but there is also a tired, sad, and unmotivated part of me that’s ok with letting go.

I think because I am so alert and let’s be honest, stressed, at retreats, my memories of them are still pretty clear. If you ask me what families attended one of our 30 retreats since 2015, I can remember them all. This clarity about what we’ve accomplished with Rett’s Roost reminds me that this could be my life’s work not just ten years of satiating my own grief. That giving up is not an option. Although I struggle recalling the happy memories of Rett’s life, I do truly hope we can keep making beautiful memories in his honor. I don’t want the years to pass to the point that over the next decade, Rett’s memory and name fades away completely.

As I continue to plan for this year’s retreats, I secretly hope for an obvious sign from above. Ideally, a person who knows how to help us grow and thrive. Or even a perfect location gifted to us from someone that believes in our work. Perhaps even a large donation earmarked for operational improvements. For Rett’s 10th birthday, I am putting this out there in the universe.

Are there really angels watching over us? I’m not one to pray. Even standing on my yoga mat and setting an intention has felt futile over the years. I’m a realist, grounded in the here and now. My memories blurry or unreachable. The future, an utter mystery at this point. All I can do is accept each day as it comes with a keen eye out for little nuggets of wisdom, harbingers of change, and possibly even divine messages. Whatever changes from now until Rett should be turning 20, whatever memories fade from my mind, one thing that will remain unwavering, is our love for him. No matter what happens with Rett’s Roost, that love will be our constant.